'We need more than crisis care': Families' plea as dementia deaths hit 20-year high

Dementia charities are warning the number of deaths caused by Alzheimer’s Disease and other dementias show Scotland needs to improve care pathways nationwide.

In 2024, 6,612 deaths were registered with these conditions as the underlying cause – 121 more than the previous year. It’s the highest annual total since 2000.

Bill Alexander’s wife, Christine, was diagnosed with dementia in 2019 but just five years later, she died of a heart attack.

Despite Christine’s diagnosis, the couple made it their mission to experience as much as possible together before her health deteriorated.

In the first few years, the two managed well together, but as time went on, and Christine’s condition worsened, the strain began to take a toll on Bill’s own health.

Bill said: “We reached the stage where Christine could do realistically nothing on her own and it got to be a bigger strain and things got worse. The hallucinations got more frequent, more frightening and people noticed my health was getting worse. I thought I was doing okay.”

Christine died following a heart attack in December 2024 STV News

Although they received some support, Bill eventually needed spinal surgery. It was just a few weeks later that Christine’s health took a turn for the worse.

She was taken to hospital with a urine infection and died in hospital just before Christmas last year.

“We lived as well as we could, for as long as we could. But the way it seems to work is, you get your care at crisis level and it fixes that one problem, not the bigger thing.”

Bill argued that more must be done to ensure that people living with dementia can live as well as possible, with comprehensive support from the earliest stages.

Research by Alzheimer Scotland has estimated cuts worth nearly £154m are being proposed to services for older people and community care across the country.

He added: “We need more resources – maybe people with dementia are an easy target because they’ve not got a loud voice.

“These cuts are far more severe than any politician could ever understand.”

Bill also raised concerns about the “massive” costs associated with care home fees.

He shared the case of an elderly woman whose family spent over £200,000 on her three-year care home stay; only to be told they must now arrange to move her to another facility because her funds have run out.

“That woman had been in for three years and had been asked to leave once her money ran out,” he said. “It might be economic, but it’s immoral.

“You don’t pay if you’ve got cancer, you get palliative care. Why is dementia different?

“That’s a real worry for 90% of people. Not many could spend £7,000 a month for three years. But they want the best for their loved one.”

Alzheimer’s disease and other dementias continue to be one of the leading causes of death in Scotland.

Meanwhile, the rate of deaths has almost doubled in the last two decades.

The Chief Executive of Alzheimer Scotland, Henry Simmons said: “We want to bring an end to postcode lottery, we want to ensure that people get a guaranteed level of support from that point of diagnosis, through to the moderate stages and through to the advanced stages.

“In the advanced stages in particular, people’s experiences are so varied, some people don’t even have access to a care home environment close to them, some people are travelling hundreds of miles.

“This is just simply not acceptable and we want to see a very clear and consistent pathway that is agreed at a national level and is implemented consistently and locally throughout Scotland.”

In total 10,618 death registrations mentioned Alzheimer’s Disease or other dementias.

More must be done to tackle growing dementia crisis, campaigners warn STV News

Despite Christine’s condition, dementia wasn’t mentioned on her death certificate, leading Bill to believe the number of annual deaths is far higher than reported.

He’s now a member of Alzheimer Scotland’s National Dementia Carers Action Network – where he provides support to other carers and hopes to implement change.

He has also volunteered in research initiatives dedicated to early dementia detection and the creation of new pharmaceutical treatments.

“Something that prolonged family life a bit more would have been worth it for us,” Bill said. “I’d have sold the house tomorrow if something could have got Christine out of it.

“It was hard at times, but we had a good life. We were a loving couple doing the things we enjoyed. Going out, listening to music, spending time with grandkids. We were joined at the hip and did almost everything together.

“It’s important to keep people doing things, talking, and out and about – you need to live well as long as you can.”

A Scottish Government spokesperson said: “We want to ensure that people living with dementia can access high-quality care and support they need. That’s why we are investing in dementia services and social care, to support those who deliver these services and those who rely on them.

“We will provide almost £2.2bn of investment into social care and integration support this year. Our 10-year dementia strategy includes specific investment of £4.35m this year to increase direct support to dementia community groups across Scotland and improve access to post-diagnostic support.”